Notes from Joe, March 2020

Notes from Joe

Coronavirus Update
By Joe Pugliese

Dear Community, Like all of you, we are stunned by the recent events that have and will change our world forever. It is impossible not concerned about our own well-being and that of all people here and around the world. Like all of you we are wondering how this will play out over the coming weeks and months. The last few weeks have been unlike any we have ever seen.

At the Alliance, we are focusing on assisting all of our members in setting up systems to ensure patient access to care is maintained. We reached out to the HRSA Office of Pharmacy Affairs seeking their assistance and guidance in setting up a pharmacy network with redundancies to protect our patient community. Admiral Krista Pedley PharmD, MS RADM, USPHS responded to our request for expedited acceptance of additional contract pharmacy options within 24 hours of our request. HTCs across the country are evaluating their current disaster preparedness plan and assessing what steps they need to take to enhance their ability to respond to potential disruption in service.

We also reached out to all of our manufacturing partners to get a real time assessment of their supply chain integrity. All manufacturers report good supplies of the life-saving products. They are also constantly reviewing their supply chains and their manufacturing capacity with an eye towards enhancing redundancies throughout their operations.

We have reached out to NHF, HFA and regional leaders to try to coordinate responses and identify opportunities to eliminate barriers to maintaining seamless patient care. I’m proud that the Hemophilia Alliance Board has approved an additional $500,000 in emergency patient assistance funding to be made available through the Hemophilia Alliance Foundation in partnership with chapters across the country. Details will be forthcoming over the next week, but it will likely be the same grant process the Foundation has used in the past. We need to thank Alliance member HTCs and our manufacturing partners for making this possible. Speaking of the Alliance Foundation, the checks for recipients of the regular 2020 grant cycle will be coming out over the next week. The Foundation board approved $701,000 in grants this year. The emergency funding is in addition to these grants.

Finally, unrelated to COVID19, the Hemophilia Alliance Foundation is announcing the first ever BIG GRANT award opportunity. My thanks to Brenda Riske, Susan Karp, Amy Marquez and Stephanie Raymond. There is an article with more details later on in the newsletter. This is a perfect opportunity to test your skills at collaborating while working remotely, managing home schooling, looking out for loved ones and for all the healthcare professionals, trying to take care of the rest of us at the same time.

We are going to get through this. It will not be easy. It will require all of us to work together. No matter how often you find yourself still awake at 3 am or waking up at 3am, we will get through it. Be safe!